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Title: hopefull Post by hopefull on Jul 22nd, 2003, 7:25am Homealone has imformed me I did not sufficiently grovel at the feet of the Lords and Ladies of the Realm last night...that I didn't answer enought or the right questions Yes I'm 46 years old and my Dad still tries to protect me... I'm okay with what ever you throw at me I realize you have decided I'm a fake, sympathy junkie...if only that were true then I wouldn't hurt like I do....Ask me anything....I Let the INQUISITION |
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Title: Re: hopefull Post by hopefull on Jul 22nd, 2003, 7:26am begin I'll asnswer you to the best of my ablitiy and if you kill me off so be it1 |
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Title: Re: hopefull Post by BobG on Jul 22nd, 2003, 7:36am Quote:
OK, here's one..... In Salt Lake City, there is/was a Children's Hospital up on the East Bench. What is the name of it now? |
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Title: Re: hopefull Post by hopefull on Jul 22nd, 2003, 7:41am At least you starting off with a little humor I guess |
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Title: Re: hopefull Post by cathy on Jul 22nd, 2003, 7:43am I thought it was sarcasm...still I have been wrong before... ;D |
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Title: Re: hopefull Post by hopefull on Jul 22nd, 2003, 7:45am What no Questions after all the bitch |
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Title: Re: hopefull Post by hopefull on Jul 22nd, 2003, 7:45am sorry "bitching" |
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Title: Re: hopefull Post by BobG on Jul 22nd, 2003, 7:46am Quote:
I did. Quote:
You didn't. Next question.........Why didn't you? |
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Title: Re: hopefull Post by Hooter on Jul 22nd, 2003, 7:47am I have a question. Why are you doing this, is your life really that empty of anything else? Hooter |
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Title: Re: hopefull Post by cathy on Jul 22nd, 2003, 7:47am YOU took it as bitching, guess your wrong too some of the time. Please IM me if I can help you in anyway, I think it'll be better for both of us. Cathy |
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Title: Re: hopefull Post by hopefull on Jul 22nd, 2003, 7:49am I came here looking for others who hurt like i do and understand...Yes I have a life a very painfull one....I would rather be doing anything else than dealing with this |
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Title: Re: hopefull Post by echo on Jul 22nd, 2003, 7:50am Welcome back hopefull. Im hopefull you'll stay around. I kill me sometimes ;D. Questions ? ok When you are going though an attack that goes on for hours are there times when the pain subsides for a minute or two, gains strength for 15 or 20 and subsides again only to return time and time again. Making an attack seem like a straight 10 hour ride when in reality you've had 10 or 15 back to back? Hope that makes since. It's early. |
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Title: Re: hopefull Post by hopefull on Jul 22nd, 2003, 7:54am yes it's like labor pains but for me it seems to never go away...maybe i'm tensing up in aticipation of the next peak...Neuro thinks that is why my neck freezes up all I know is I just seem to hurt constantly to one degree or another...morning to night |
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Title: Re: hopefull Post by brain_cramps on Jul 22nd, 2003, 8:03am on 07/22/03 at 07:50:41, echo wrote:
Good question, echo. I regularly get HAs between 4 and 6 hrs. Being med-free, I get to find out just how long they do last. Usually, I don't feel any subsiding. Regardless, 20 hrs seems like a long time. I'm not sure if I could handle that without an abortive. I'd be ready for a little rubber room after that. just my .02 worth, grant |
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Title: Re: hopefull Post by hopefull on Jul 22nd, 2003, 8:05am The regular MD tried zomig with muscle relaxers it did nothing for me this was when they thought it was migrains then they tried imitrex with hydrocodne still didn't work...I mean nothing not even a dent...this last month they sent me to the neuro and he gave me (after telling me I have clusters) verapamil with indomicin and Firocet that did not prevent or help the attack I had 3 weeks after starting that it was a bad one so last thursday he upped the verapamil and changed pain killers to ultracet and added topral-xl I go back today to follow up...I am feeling better but don't know if it's the meds or If my cycle is ending.. |
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Title: Re: hopefull Post by FrankF on Jul 22nd, 2003, 8:09am How much verapamil are you taking? |
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Title: Re: hopefull Post by hopefull on Jul 22nd, 2003, 8:10am My husband is very good to me comes home from work to try and keep tha panice at bay...my son has become very good at neck rubbing, they understand when I need back up My son has bad headachs the worst then my daughter and my youngest has headaches but not bad...I try to keep on top of them and make sure they get the help they need two are married ...and like dad i still watch out for them |
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Title: Re: hopefull Post by catlind on Jul 22nd, 2003, 8:12am Hopefull, ask the neuro to get you on prednisone. That aborts the cycle for most clusterheads while the preventatives kick in. It's known as the transition phase of treatment. |
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Title: Re: hopefull Post by hopefull on Jul 22nd, 2003, 8:12am I'ts not much 180 as of Thursday...I'm very sensitive to meds..have trouble breathing sometimes so he's taking it slow |
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Title: Re: hopefull Post by OwieMan on Jul 22nd, 2003, 8:13am So everyone in your family has these headaches? |
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Title: Re: hopefull Post by catlind on Jul 22nd, 2003, 8:14am Ch'ers generally need to be on verapamil in the 480mg per day range and many take 960. You can also combine it with lithium. That and pred are are the best cocktail out there for CH for most people. |
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Title: Re: hopefull Post by hopefull on Jul 22nd, 2003, 8:14am He mentioned steriods as a possiblity and h2o but It's early in the game 1 month of being treated by him |
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Title: Re: hopefull Post by hopefull on Jul 22nd, 2003, 8:17am MY father and older sister...Me my daughter has migrains as well as my middle son my youngest son and husband don't have migrains but regular type headaches....My concern is for my older son becasue Ch i'm told runs hi in males... |
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Title: Re: hopefull Post by catlind on Jul 22nd, 2003, 8:22am The actual ratio of male to female for CH is now at 2.1:1 M:F. This is the latest info that is out, we just finished getting all the new info on things at the convention. Even though it's early in the game you need to be on a much higher dose of verap than that. The verap takes a couple of weeks to get in your system, it's a preventative treatment. The pred is used as a transitional treatment while the verap gets up to level in your system. Mention it to him and see about getting on those meds and getting imitrex as an abortive and O2 as an abortive as well. Migraine along with CH can run together and cause a nightmare. I posted to the mis/un diagnosed thread, read that, there are the names of the 4 leading docs in CH there that you can try to contact about dealing with aberrations in refractory CH. Please remember that very few neuros have any experience at all with real life CH. They get 5 hours of education on headaches, all headaches, while in school. That straight from the mouth of one of the top researchers on the east coast. |
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Title: Re: hopefull Post by hopefull on Jul 22nd, 2003, 8:29am I understand ...while I was waiting in the Neuros office I talked to others 8 out of ten were there with head aches...He has lots of literiture and was very imformative..besides Insurance being what it is you see who they tell you to see...but all -n-all he seemed up on cluster imformation |
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Title: Re: hopefull Post by hopefull on Jul 22nd, 2003, 8:30am He questioned me with the same type of questions found on the web page quiz and some that weren't there like the switching side |
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Title: Re: hopefull Post by Hooter on Jul 22nd, 2003, 8:35am Golly gosh gee whiz Hopefull I hope you're on a cheap rate Internet access or you'll be broke as well as in pain! Pip, pip and toodleoo for now old bean Hooter |
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Title: Re: hopefull Post by OwieMan on Jul 22nd, 2003, 8:42am Thats funny how you and your dad both spell information like "imformation" and use dots instead of commas most of the time. Heres one of the signs of internet munchausen. Besides being a board sleeper. :) 7. others apparently posting on behalf of the individual (e.g., family members, friends) have identical patterns of writing Maybe I'm WAY out of line here and I'll leave that up to the community here. The thing that sucks the most about it, is that it's a sickness in itself and they should have their own messageboard. IF you do truley have these headaches and arent just looking for attention, you at the very least need to learn some Internet Ettiquette and give people a chance to warm up to you. I know I am kinda jumping all over this thing and maybe it should be left to the people that already call this home, but it pisses me off that this person is coming on here trying to get all this attention and totally disrup[ting the messageboards for everyone else that is coming to this place looking for support. Everyone should read these. http://www.healthyplace.com/site/article_faking_2.asp http://www.healthyplace.com/site/article_faking.asp http://www.medsupport.org/fakingit.html |
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Title: Re: hopefull Post by hopefull on Jul 22nd, 2003, 8:48am sorry I'm not trying to get to anyone my dad sat here and type on the comp last night asked me some things and wrote what i had to say people are always saying how much alike we are and yes he's here he lives in the country and come to visit at times and uses the internet if thats a problem for you so be it ..if it makes it easier for you thats fine have you ever asked some one a question them typed the answer for them..as far as the dot dot dot he saw me doing it and did it...so neither of us are good at spelling so what he ask i try to help by guessing at it...if we could all spell correctly why do we have spell check...If it makes your day to worry over this go for it |
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Title: Re: hopefull Post by hopefull on Jul 22nd, 2003, 8:52am I thought i was going to get questioned about my headaches to prove if i had them or not but what ever |
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Title: Re: hopefull Post by catlind on Jul 22nd, 2003, 8:55am Feel free to give us the symptoms that you experience in detail hopefull. I am trying to give you info on the known treatments for CH so that you can get what you need. I personally will not grill you to get answers. It makes it easier for us to give you information if we know alot about your particular circumstances regarding CH. If you want to share that great, if not, then remember that our ability to give you information and help you will be limited. |
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Title: Re: hopefull Post by OwieMan on Jul 22nd, 2003, 8:59am If thats not the case, at least try and tone it down a bit. You have to be respectfull when you come into someones house or people might get offended. I really dont know if you are who you say you are, but I know that the last way to approach a community of people is by spamming their boards and not listening to people when they tell something. It just doesnt fly on any community type messageboars, you are the new guy, give them a chance to get to know you a bit. Regardless of what you say, you are being an attention grabber by continuing with these threads. DROP THEM Sorry everyone...I deal with board sleepers all the time and they usually just cause a buncha problems and make people fight. |
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Title: Re: hopefull Post by hopefull on Jul 22nd, 2003, 9:05am My face starts hurting first usually then my right eye most of the time like an ice pick being pushed in then the pain at the back of my head is like a chisel and sledge hammer at work....sometimes my eye twicthes(yes dad wrote it for me on the med page when he ask me) i have sharp pain in my ear deep down inside my neck freezes up hard as a rock tears stream down my face sitting still is not an option panic usually sets in at the wosrt of it....either it will kill me or I'll get over being a coward and end it.. |
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Title: Re: hopefull Post by hopefull on Jul 22nd, 2003, 9:09am I wasn't tring to be the center of attention I felt attacked was told i'm not a Ch'er didn't understand ya'll...when you feel attacked you don't try to defind yourself or family so i thought i would give ya'll a shot at me today thats all |
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Title: Re: hopefull Post by hopefull on Jul 22nd, 2003, 9:13am I've only started this one today..never having been on a message board before i've been hitting the titles then reading i don't have anything scrolling on the screen didn't know if that was possible still don't |
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Title: Re: hopefull Post by catlind on Jul 22nd, 2003, 9:19am If you have endured CH for as many years as you have then suicide is not an option, you are stronger than that. Call your doc pronto. Don't deal with this alone. We cannot help you in that area, we are not professionals, we are sufferers that know as much and most times more than most docs. Call your doc and let him know you are suicidal. |
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Title: Re: hopefull Post by hopefull on Jul 22nd, 2003, 9:22am you misunderstod I'm not about to knock my self off but durring the wosrt of it it does feel that way and ahve thought about it...I have people here that depend on me i'm not asking anyone to save me. |
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Title: Re: hopefull Post by CJohnson on Jul 22nd, 2003, 9:28am Hey, Hopeful. What do you think causes CH pain? Do you have any theories or speculation? PFDANs -Curtis |
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Title: Re: hopefull Post by catlind on Jul 22nd, 2003, 9:29am We've all thought about it. It's serious stuff, which is why I reacted the way I did. Not something to mess around with. |
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Title: Re: hopefull Post by hopefull on Jul 22nd, 2003, 9:34am agreed! if i knew what set them off i'd fix myself...i do know that to much sugar messes me up bad during a cycle |
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Title: Re: hopefull Post by hopefull on Jul 22nd, 2003, 9:44am Thanks to all the people who supported me with private messages and e-mails....your wisdom is greatly appreciated... |
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Title: Re: hopefull Post by 9erfan on Jul 22nd, 2003, 10:46am I'm finally getting into this thread (been trying to catch up). I'm sorry, but with as rare as these h/a's are...I find it hard to believe that a father & 2 daughters from the same family ALL suffer from Clusters. Maybe I'm just a skeptic. JMHO ??? Virginia |
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Title: Re: hopefull Post by hopefull on Jul 22nd, 2003, 10:54am I didn't say they suffered from clusters they have very bad migrains according to their Dr. as do my 2 of children My neuro was very carefull to get all the back ground and found it odd that i should have more than just migrains but he felt very strongly that i did. |
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Title: Re: hopefull Post by 9erfan on Jul 22nd, 2003, 11:04am Ok, so I must've misunderstood your post. The question to you was "so everyone in your family suffers from these headaches?" and your response was: on 07/22/03 at 08:17:33, hopefull wrote:
I understood this to mean you, your father, your older sister have clusters; your daughter & middle son have migraines, and your youngest son & husband have regular type headaches. Your "father" has already stated in another post that he IS a cluster sufferer and that is why he is on this board. |
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Title: Re: hopefull Post by FrankF on Jul 22nd, 2003, 11:10am Quote:
I think he was just here last night to jerk a few people's chains because of earlier events. |
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Title: Re: hopefull Post by hopefull on Jul 22nd, 2003, 11:18am I think he (dad) might cause he feels the samethings i do sometimes.. not often but at times and won't go to the neuro so he probaly shouldn't have included himself but he's my dad and i love him for try'n to help me out |
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Title: Re: hopefull Post by hopefull on Jul 22nd, 2003, 11:25am It's more like he suffers along with me i guess |
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Title: Re: hopefull Post by 9erfan on Jul 22nd, 2003, 11:33am ::) Is it any wonder people are having a difficult time figuring out what your deal is?? |
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Title: Re: hopefull Post by hopefull on Jul 22nd, 2003, 11:41am It dosn't matter anymore..I'l lget what i need from the site and ignore the rest i know what i go thru and nothing anyone says will change that...This is like being back in high school...bullies brats and know it alls...then the regular joes...would rather be a regular joe anyday |
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